Your 2024 Round-Up is Here!

Join us as we look back at the past 12 months of Support, Awareness and Research at Alopecia UK. We packed a lot in to the past year, so perhaps grab a cuppa whilst you look back on another busy year!

May 

We kicked-off May by opening nominations for our Hannah Dennis Alopecia Awareness Award. It was the fifth time Alopecia UK have opened nominations for the award, something we are proud to do each year. We are committed to celebrating the alopecia awareness efforts of fantastic young people in our community, whilst honouring the memory of Hannah who passed away in 2018. We look forward to the 2025 Hannah Dennis Alopecia Awareness Award.  

We were delighted to see a new portrait series of men with alopecia universalis from photographer Orlando Gili, inspired by his own experience with alopecia. The project in collaboration with the Wellcome Trust was something we were happy to support Orlando with, connecting him with participants willing to have their portrait taken.  

We welcomed Manisha Chana to the Alopecia UK Trustee Board as your new Treasurer.  

June 

The month started with Volunteers Week, in which we celebrated the efforts of our support group leaders, Facebook group moderators, event volunteers, Lay Research Panel members, and Trustees. Alopecia UK can only do the work it does with the help of our incredible volunteer team.  

Our CEO Sue Schilling attended Appearance Matters 10, an international biennial conference hosted by the Centre for Appearance Research at the University of West of England. The event focuses on the psychological and social aspects of appearance differences, including dermatology conditions like alopecia.  

In June, we bid farewell to Professor Simon Milling who had been Chair of our Research Committee since it was created in 2018. We welcomed Professor Des Tobin as his successor. We are very grateful for the brilliant scientific minds that we are in touch with.  

New resources were added to our website as we continued to expand the ‘Advocate for yourself’ section. ‘How to get the most out of a dermatology appointment’ and ‘How to advocate for yourself within the NHS’ were designed to help our community get the most out of medical appointments, and navigate some of the challenges currently being faced in the NHS.  

The South Asian Health Foundation published its ‘Health Equalities: Full Stop’ report. Alopecia UK was proud to support the report with an article titled ‘Is alopecia treatment becoming a story of the haves and the have-nots?’, continuing our important work in the advocacy space.  

We were delighted to support Saha, an alopecia awareness and fundraising event with some incredible musicians. The event was organised by Alopecia UK supporter Hetal Peshvaria and was designed to raise awareness in the South Asian community. Alopecia UK Communications Manager Amy attended, along with our Reading Support Group leader Neha, and our ex-Trustee Shalini.  

July

Our CEO Sue, and Trustee Lynn Wilks, attended the 104th meeting of the British Association of Dermatologists. Sue and Lynn hosted a charity stand at the event and engaged with many clinicians, discussing alopecia treatments, support, and wig provision concerns. We are delighted to be invited to this important event each year, and we have not only raised awareness of the charity amongst doctors, but also made some great contacts who add incredible value to Alopecia UK.

Special thanks to Dr Marianne de Brito who spoke at this year’s conference, on behalf of Alopecia UK, about the challenges within NHS wig provision.  

Dr Fabio Zucchelli shared the results of his research study on psychological support for people with alopecia areata. During the project, he spoke to different people who had experience of giving or receiving psychological support for alopecia areata.

This resulted in sets of recommendations for providers of psychological support that people with alopecia areata may encounter on their journey: GPs and dermatologists, mental health professionals, trichologists, and peer supporters.   

August

The rain held off for our family residential event at Kingswood activity centre in South Yorkshire. We welcomed 25 families to the event, making up over 100 attendees. Children and adults alike were challenged by zip wires, crate stacking and Jacob’s ladder.

There were also campfire songs and toasted marshmallows. Most importantly, friendships were made, and a lot of fun was had!  

In the final days of August, the BBC released the BBC iPlayer documentary ‘My Alopecia and Me’, and played it in its entirety on BBC Breakfast on Saturday 31st August. We are thrilled that it was played to such a large audience and expect millions of people will have received some alopecia awareness as a result. Alopecia UK worked behind the scenes with the documentary producers, not only finding participants for the film but also fact-checking information included. You can watch the film on the BBC iPlayer.  

September 

Alopecia Awareness Month 2024 was a great success. Our awareness theme was ‘We Are Worth It’, and our social media posts included some of the challenges that people with alopecia face, as well as ways in which people are living well with alopecia. Our content carried the message that those with alopecia are worthy of care and compassion, and being worth more than the standard of care we sometimes receive.  

We started the month by awarding 10-year-old Tommy the 2024 Hannah Dennis Alopecia Awareness Award for his efforts in raising awareness of alopecia. He was very excited to be our 2024 winner.  

We had more than 50 Charity Champions take up our call to ‘Go The Distance’ and saw lots of creativity with how they interpreted that challenge. We saw our Charity Champions get involved in running events, mountain climbs, swimming challenges, walking challenges, coffee mornings, Zumba challenges and more! Between them they raised an incredible £35,000 (including gift aid) for Alopecia UK. A final thanks to all our Champs and everyone who donated.  

In addition to our Charity Champions, a brilliant team of 12 runners took part in the Great North Run and raised £8,696! (We’re delighted to say we also have some Great North Run places in 2025 too – if you’re interested in being one of our 2025 runners, find out more here!) 

During the same month, we attended the British Dermatological Nursing Group’s conference in Harrogate, speaking to many nursing staff about how we can support their patients. Sue also spoke at the British Hair and Nail Society’s training event for new registrars. 

October 

In October we announced the date for our 2025 Big Weekend event. Our conference-style event provides a unique opportunity to learn more about alopecia, including hearing from experts, whilst also being able to have lots of time to socialise with others affected by alopecia. Plus, an Exhibitor Hall will have some fantastic brands offering products and services to those with hair loss. Early bird tickets will go on sale in the New Year.  

Our friends at Aderans Trendco hosted their annual fashion show fundraiser in Brighton, to raise awareness and funds for Alopecia UK and other charities. The evening was a huge success with £3,000 being split between Alopecia UK and four other worthy causes. Thank you to all the team at Aderans Trendco.  

November 

We shared the good news that we had received a £5,000 grant from The Access Foundation, to support the funding of our Kids Activity Groups in 2025. This came about thanks to a nomination from one of our community members, Haydn, who is an Access employee. We look forward to announcing dates for upcoming Kids Activity Groups in the weeks and months ahead.  

Sue and Amy attended the ‘All About Alopecia’ event organised by Vocal, on behalf of NIHR Manchester Biomedical Research Centre. Dr Matthew Harries and his team presented on the latest research and treatments. Alopecia UK supported with a session about living with alopecia, and Sue gave a talk about what the charity can offer people with alopecia.  

In continuation of our investment in alopecia areata, thanks to the generous legacy donation which was restricted for just that, we opened a new funding call for up to two more PhD projects. By investing in early career researchers and attracting new talent into the field.. Applications for our PhD bursaries close on 14 February 2025, and the winning projects will be announced in April. .  

We ended the month with a full staff and trustee team meeting, to start the work to build our charity strategy for the next 3-5 years. Being the small charity we are, with a staff team that works remotely, it is not often that we all get together face-to-face so it was brilliant to all be in the same room. We look forward to sharing more about our strategy in 2025.  

December 

The first half of the month was focused on getting lots of responses to our Community Survey (now closed). The survey forms part of our advocacy work with Principle Consulting to campaign for fairer treatment pathways. In 2025, we will publish a report to highlight the challenges that people with alopecia face within the NHS, and identify areas for improvement.  

We launched our Christmas appeal, asking our community to help light up our virtual Christmas Tree. The Winter months are a quieter time for donations and fundraising so ending the year with a Christmas appeal is a good chance to bring in some much-needed funds, whilst also hearing some lovely messages from people in our community too! There is still time to add a decoration and donation to our tree here.  

In partnership with 9 other healthcare charities, we submitted feedback to the government's consultation on the new 10-year NHS plan, warning that fragmented care is putting patients at risk and increasing pressure on an already strained system.  This work was funded by Pfizer. 

Looking ahead to 2025 

As we look to the New Year and beyond, 2025 is set to be another busy year for Alopecia UK. We will be continuing our advocacy work with Principle Consulting and look forward to publishing our report in the Spring. We will also continue the work that we started at the end of 2024 to refresh our charity strategy. There will be more to see on this as 2025 progresses. We look forward to continuing to partner with clincians and researchers on projects that support people with alopecia.  

2025 is a special one for AUK! 2025 marks our 20th anniversary year. We hope that many of you will get involved, in whatever capacity you can, and we hope to provide you with lots of opportunities! We’d love to see lots of you at our Alton Towers event in April (tickets on sale here), and our Big Weekend in September (tickets on sale in the New Year).  

We would LOVE for lots of you to get involved in fundraising during 2025. You can find lots of ideas in the ‘Fundraise’ section of our website. One idea we’re suggesting for 2025, is for you to ‘Donate your Birthday’ during our big birthday year! An easy fundraising option for those not wishing to don a pair of running shoes! 

Thank you! 

We would like to take this opportunity to say a big thank you to EVERYONE who has supported or interacted with Alopecia UK in any way during 2024. Perhaps you attended one of our support groups, donated to us, joined one of our events, did some fundraising, volunteered for us, posted in one of our private Facebook groups, wrote a blog for us, served on our Trustee Board, Lay PPI Panel, or Research Committee, or helped raise our profile as one of our Ambassadors.  Or maybe you are one of the brilliant Youth Voice Board members who helped to host online sessions for our Youth Network and created engaging content to inspire and support.  Whichever way you got involved – thank you so much! We couldn’t do what we do without you.

Thanks for your support and we hope to see you in 2025!